Autistic Women: Misdiagnosis and the Importance of Getting it Right

If you’re autistic, there’s a good chance you have also been given at least one of the following diagnoses: generalized anxiety disorder (GAD), social anxiety disorder (SAD), ADD/ADHD, obsessive compulsive disorder (OCD), eating disorder, major depressive disorder (MDD), Tourette’s, bipolar disorder, borderline personality disorder (BPD). Current research suggests that as many as 8 out of 10 autistic individuals have at least one other psychiatric condition–commonly referred to as a comorbid condition.

Are autistic people predisposed to certain psychiatric conditions or are our autistic traits commonly mistaken for symptoms of other conditions? As someone who received a dual diagnosis of anxiety disorder and Asperger’s syndrome, I’ve spent a lot of time thinking about how my anxiety relates to being autistic and whether it is, in fact, disordered.

In talking to other women about their experiences with the mental health system, I discovered that this is a common reaction to a comorbid diagnosis. While mostEdited Call-out-box-logo_6 women on the spectrum feel that their autism diagnosis is a good fit, our relationship with our other mental health labels varies greatly.

Nattily, who received her autism diagnosis at age 25, was diagnosed with several other conditions in high school and college:

   “I was diagnosed with major depression as a teenager when someone told the school I had been self-injuring for a couple years.”

She believes that was a misdiagnosis and says that the mishandled intervention that followed made her skeptical of getting help for other conditions:

“Later, in college, I was diagnosed with anorexia and… bipolar disorder. I disagreed… at first, but I think that’s pretty common. I see now, about six years later, that they are both accurate and that they both require treatment,” she said, adding that the treatment she’s received for both has been on target and helpful.

For other autistic adults, depression and anxiety are seen as side effects of being autistic in a neurotypical world. Carolyn, who in addition to identifying as autistic has been diagnosed with GAD and MDD, says:

“I’ve had symptoms of both since about middle school, and those I feel are related to my neuroatypicality, or at least to my navigating of the world while neuroatypical.”

She goes on to wonder if those symptoms would exist or would be as severe if she wasn’t on the spectrum.

Some professionals have taken the relationship between anxiety, depression and autism a step further. Bartak, Bottroff and Zeitz have proposed a model that suggests anxiety and depression, especially in autistic adults, often result from “ineffectual intervention strategies” used by professionals who fail “to recognize the developmental features and dynamic and functional aspects” of autistic behavior. In other words,[1]  being autistic doesn’t necessarily raise our chances of having anxiety or depression. A more likely risk factor is the use of intervention strategies that don’t take into account the functional aspects of autistic behavior.

Many of the women I talked to for this article agreed that the anxiety or depression diagnoses they’d been given were accurate, but added that those diagnoses alone didn’t tell the whole story. And that’s where comorbid conditions can present a problem for autistic adults.

Misdiagnosis: When Comorbids Take Center Stage

Finally diagnosed at 44 with ASD, Jayne says that during the year and a half it took to make herself understood to mental health professionals:

“a lot of other mental health conditions were put forward. My communication is bad and I was suffering from posttraumatic stress and I had to keep saying, ‘No that’s not right’ until someone mentioned autism and I looked into it and said, ‘That’s it.’ It was a relief.”

Like many late-diagnosed women, she invested a significant amount of energy in advocating for herself as she sought an explanation that fit.

Viewing autism through the lens of a single strong or dominant trait can lead to misdiagnosis. For example, an adult with strong perservative tendencies may be incorrectly diagnosed with OCD. Serious difficulties with executive function can mimic the symptoms of attention disorders (ADD/ADHD). Some adults go through life accumulating an alphabet soup of diagnoses: ADHD, OCD, GAD, SAD, BPD . . . when, in fact, a single correct autism diagnosis would better account for most of their symptoms.

If a clinician views a comorbid disorder as the primary reason that a patient is seeking help, they might simply stop there, missing other symptoms of autism. Women in particular may be vulnerable to misdiagnosis because autism is assumed to be less common in females. When a  clinician subscribes to the myth that autism is an unlikely explanation for a female patient’s difficulties, he or she may reflexively look to other conditions first for a more likely answer.

A woman who reports feeling sad and lifeless due to autism-related difficulties with maintaining relationships may be diagnosed with major depression. The same is true of a person who rarely leaves the house, has few social supports, or lacks interest in social activities. Clinicians can look at these atypical behaviors and see them as signs of depression rather than autistic traits. While treatment for depression may be warranted, treating an autistic person only for depression without also providing help for building coping skills will likely result in frustration for both the patient and the clinician.

The same is true of anxiety disorders, especially social anxiety disorder or social phobia, which are commonly diagnosed in autistic women, either alongside or in place of autism. Some clinicians fail to differentiate between the irrational social anxiety that fits the definition of a separate disorder and the rational fear of social interaction that occurs when a person struggles to read body language, make small talk or follow a conversation in a noisy room.

As Emily puts it:

“While I do have social anxiety, I do not have the disorder. If every time you try to do something, you mess it up, you start to get pretty frustrated and you might want to give up. But I can’t give up on social interaction – you have to interact competently with people to be an adult in our society. So stakes are pretty high on me pulling it off, but I’m very bad at it. The combination of high stakes on something I’m very bad at is what causes my anxiety – just like someone who’s bad at math but needs to pass their exam to get into a program or job they want would get anxious over that exam. Except my exams are all day, every day.”

The distinction between justifiable social anxiety and a social anxiety disorder is important. For many autistic adults, it may be the difference between the road to self-acceptance and reasonable accommodations or years of self-defeating therapy to fix a disorder that doesn’t exist.

The Importance of Accurate Diagnosis

Inaccurate diagnosis can have life-altering consequences. Helena, who was diagnosed with BPD as a young woman, spent a year and a half in the youth ward of a psychiatric hospital. She described many aspects of her care as helpful, particularly the highly structured nature of the program, the emphasis on daily physical exercise and the many opportunities for social interaction. However, she also sees the lost opportunity in her misdiagnosis:

“I think they were misinterpreting everything I did and assigned me motivations I didn’t have . .  . Possibly that partly explains why the treatment was quite ineffective and why I stayed so long and they didn’t know what to do with me.”

Bartak and his colleagues believe that this type of diagnostic confusion sets the stage for misdiagnosis, particularly in autistic individuals with comorbid psychiatric syndromes.

After being diagnosed with autism in her early forties, Helena now believes that what her doctors described as “BPD emotional instability” was actually autistic meltdowns due to social stress and the stress of living in an institutional setting. With a more accurate assessment perhaps her treatment would have been more effective, shortening her time spent in care.

“The problem solving focus was not on the right areas,” she says. “What the focus should have been: help to develop independent living skills / executive function skills and social skills, because those were my core problems.”

[1] p. 249-250 in “Stress and Coping in Autism”

About the Author: Cynthia Kim is the proud owner of many labels including woman, wife, mother, writer, editor, entrepreneur and most recently, autistic. Diagnosed with Asperger’s in her early forties, she began blogging about life on the spectrum at Musings of an Aspie. She is the author of “I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults” and  is a regular contributor to Autism Parenting Magazine. When she’s not writing about all things autism, she indulges her passion for words by running a small publishing company and occasionally dabbling in fiction, which sometimes gets published.

25 thoughts on “Autistic Women: Misdiagnosis and the Importance of Getting it Right”

  1. I like this article, yay!

    However, I’m actually in the opposite space, wondering whether my autistic label isn’t quite right and it only appeals to me so much because these other groups don’t have the kind of culture and deep understanding of the many traits outside the diagnostic criteria that the Autistic community has. I definitely have many autistic traits and I’m glad to be Autistic, but I also definitely grew up with and still to some extent have irrational social anxiety–what if my social difficulties are more attributable to that than to an autistic neurotype? I’d like, if any of the multiply-diagnosed folks read this, to know whether people have succeeded in neurodiversity identity-building around any of these other identities.

    Borderline is interesting to me. Shortly before I discovered that my PDD-NOS diagnosis was (a) autism and (b) not completely inaccurate, I read a book with a description of BPD and was arrested by the talk of “emotional amnesia.” I remember having that when I was 14 and was therefore abusive to my online boyfriend, which is still my biggest regret/shame in life. I’d describe the emotional amnesia as not remembering that I was raging at him via IM the night before and getting online to talk affectionately, and vice versa, not remembering why I “loved” him when I started verbally abusing him. My behavior wasn’t excusable and I can only live with it knowing that I was so young at the time and quickly learned better, but it was very much a negatively stereotyped BPD pattern. (I’ve also had emotional amnesia in the context of depressive episodes, including sudden ones–possible PMDD–where I forget that I’ve been happy in the past. It’s very rare now, and I know enough to recognize the pattern and dig through my brain for the truth if it does happen. I actually got a 5-year journal to help improve my autobiographical memory and catch myself from falling so far.) I wonder whether BPD is commonly misdiagnosed in teens because an undeveloped brain is naturally prone to some of its symptoms. (To clarify, I’ve never been diagnosed or even had it suggested that I might have BPD, it’s just a condition I read about and could empathize with.) I also wonder to what extent things we call “personality disorders” are really neurotypes, although of course BPD and some others have a large component of childhood abuse influencing them.

    At some point I want to research all the diagnoses/models of neurological and psychological difference that apply to me or come anywhere close and use that to create my own mix-and-match description of my neurotype, maybe with original components I’ve observed in myself and possibly other people but that haven’t been described as features of any mental pattern. Even an accurate description of someone as “autistic” doesn’t help much if those trying to help (or, worse, fix) the person don’t understand that each autistic person is unique. For instance, I struggle with depression and that would also be an accurate diagnosis, but the rest of my neurotype and beliefs can make my depression pretty unusual, where what really gets me down is things like cats having to eat other beings with equally complex and worthy emotional and sensory lives just to survive. Any temporary dissatisfaction in my own life is fixable, but there are plenty of really bad problems in the world that aren’t, and therefore my need to be morally consistent and divest myself from structures of exploitation becomes impossible as long as I’m alive. Obviously that’s a very bad place for my thoughts to head in, but what psychotherapist is equipped to deal with an animal-rights-based existential crisis that sees nature itself as inherently full of evil? That’s also in some sense inherently autistic because neurotypicals don’t fall into deep despair at unresolvable logical inconsistencies?

  2. I was misdiagnosed as Schizo-affective @ age 16. I didn’t receive a very hesitant diagnosis of “autistic symptoms” until I was 19. A lot of time was spent in negative situations with negative people in short-term psychiatric hospitals-20+ hospitalizations from 1997-2006, mostly for meltdown and/or suicidal reasons.I was also *diagnosed*as being spoiled & difficult. I even had an *autism specialist* who had fortune telling skills. He told me I would wind up in an institution or in the morgue if not in jail. My mom paid for a limo to take us from our home to UIC ( 1 hour away) to listen to this *specialist* who spent most of the time yelling in my face (I have sensory issues) and interrogating me. A lot of people I’ve met think that intelligence is linked to controlling and overcoming all symptoms of autism.

  3. I was recently diagnosed with ASD, two years after my adult received her diagnosis. She was getting misdiagnosed, so we switched doctors. I was misdiagnosed repeatedly for over 20 years. Mostly, doctors insisted that I had depression. I knew that I didn’t. Not only did they miss autism, but they missed lupus as well because they were so consumed with depression. I’ll never get those 20 years back!

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  5. I was diagnosed ADD in my 20’s and treated for depression and anxiety in my late thirties. I’m certain if I went to a psychiatrist today I’d be diagnosed BPD. But this quote sums up my (utterly failed) life:

    “While I do have social anxiety, I do not have the disorder. If every time you try to do something, you mess it up, you start to get pretty frustrated and you might want to give up. But I can’t give up on social interaction – you have to interact competently with people to be an adult in our society. So stakes are pretty high on me pulling it off, but I’m very bad at it. The combination of high stakes on something I’m very bad at is what causes my anxiety – just like someone who’s bad at math but needs to pass their exam to get into a program or job they want would get anxious over that exam. Except my exams are all day, every day.”

    1. Jeanette Ransing

      I was struck by how reflective of my own experience your comment is. I am 32 and was just diagnosed with ADHD. Although the stimulant medication I’m taking makes my brain work faster and more efficiently, its not working any differently than it used to. I had expected to experience improvements in my life that are just not possible, and I’m beginning to see for the first time that my difficulties were made worse by the belief that everyone else’s brain works the same as mine. When I was in my 20s, I was diagnosed with major depression, then bipolar disorder, then schizoaffective disorder, then a “downgrade” back to bipolar. I have tried to wear these labels like an ill-fitting suit, but it always felt disingenuous. I also went through a ten year period of what can only be described as Borderline Personality Disorder. I was purposfully self-destructing and tormenting everyone that loved me in the process. I built a prison for myself with the only way out being suicide. During this time, the mental health diagnosis were a safe hiding place, and excuse for my increasingly erratic and dangerous behavior. I didn’t want to stop hurting myself. I didn’t want to get better. I repeatedly ran toward treatment for illnesses that I knew somehow did not describe me, and used failed treatments as proof that my cause was hopeless. I got to say, “why me? and “poor me!” I was able to recover from this dark time through forgiveness. I forgave my parents first, and I am slowly forgiving myself. I now have two children and I’m back in school, and I’m in a very supportive relationship. I have learned to cope with extreme emotions in a positive way. I’ve learned to recognize when I’m getting overwhelmed and take protective measures. I am very cautious about identifying as Autistic because I want to be sure that I’m not putting on another ill-fitting suit, or looking for another hiding place so that I can make excuses for self destructive behavior. As a borderline sufferer I think I did a lot of damage to bi-polar people and their voices, because I misunderstood what it meant to be bi-polar. I was told that I was manic and assumed that my experience was called mania. It didn’t feel different than any other day, so I started thinking that manic-depression was not a real thing. I became very fixated on disproving the existence of this disorder, and taking down the entire mental health establishment for inventing it. I was really ignoring the experiences of actual bi-polar people. I don’t want to make this same mistake again and shout over the Autistic experience. Especially since my son is on the Autism Spectrum.

  6. i was told i have depression, adhd, paranoia, and [more recently] personality disorder ~ can’t get a straightforward yes or no as to whether aspergers (which doctors haven’t tested me for, despite my request) is deemed a personality disorder, so don’t know if seeing the personality disorder team will lead to genuine help, or if its going to be more time wasted. Of course i’m now fed up as well as quite isolated.

    1. asperger’s is not a personality disorder–it was dropped in the DSM-V and is now under the umbrella of autism spectrum disorder, which is a developmental disorder.

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  9. What article has in writing is written in a way many with Asperger or HFA can not even muster after years of distress, frustration at own disability to stop being traumatized by neurotypcal world, particularly abusive people. They are emotionally distressed (unstable) as they are using all intellect and sorts to figure things out and they are not able to as their brain is wired differently. Add to it all traumas inflicted they are eventually trying to be understood and helped end up with meltdown and then be labeled “BPD, Emotionally unstable, ” I was told cryfulness is not part of Asperger but is part of pain and powerlessness such individual feels after decades or trauma and psychiatric injuries inlflicted upon them. To all of you out there, do not give up, educate yourselves, search and search, try and try. Do not let anyone lock you in what your instincts know is not true. Knowledge is power.

  10. This was a great article. As someone who has had different dx of clinical depression, SAD and GAD throughout the years. I have found solace and “that’s it” feeling when reading articles and personal accounts of adult women finally getting properly diagnosed with Autism, Aspergers in particular. Anyone have suggestions of finding a health care professional with experience diagnosing and treating/counseling women with Autism in the NYC area. I’ve been to multiple therapist over the years and add my racial identity to my gender identity and I often feel not heart.

  11. Hello, I am doing research for a school speech, and I have found your article very informative. I would like to reference it along with the quotes from Emily and Helena. However, for this speech I need to say the first and last name of the speaker of the quote, so would there be any chance you would be able to inform me of their last names? I know that’s a lot to ask, especially for privacy reasons, but it would really help me get the word out to my school about autism in females. Thank you!

    (Email me with any questions you may have regarding my motives, because I understand that you probably want to make sure I am not some creep trying to get personal information and such. If you email me I can give you my first and last name if you would like, but you probably won’t find much about me on the internet if you look me up, as I try not to give out my own personal information. Therefore, I give you my word that I am a student doing a research paper and presenting it as a speech.)

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  15. Pardon my grammar mistakes in my prior comment! I was rushing through it and trying very hard to remain brief. There are areas of my reply that I included partly because of my current situation but also in part to the article and comments I’ve read about other’s misdiagnosis’. I came across this article through my first search after reading about the Personality Disorders. The search was: “Can Aspergers in Adults be misdiagnosed as any of the Personality Disorders?”

    I’m grateful for finding this article and everyone’s comments of their personal experiences. I’m glad it’s out there to find and thankful to all who have shared. It’s reassuring and nice to know I’m not alone. I’m sorry all of you have had to endure these challenges in your lives. Thank you for your bravery in sharing them to help others.

  16. I wonder if there is something that happens in the late 20s/early 30s that leads to a cluster of women getting their diagnosis then? I was diagnosed this year at 30, having been given an inaccurate diagnosis of ADD when I was 7.

    1. Just diagnosed this week at 34, after OCD/depression diagnosis at 10, anorexia/depression at 15, and more anxiety/depression….and alcoholism (4 years sober). This time I decided to seek out a therapist that was recommended by a friend, and I’m not in crisis mode like I have been at the beginning of other attempts at therapy. I think this along with my age has lent some clarity, maybe? Still processing the diagnosis, but feeling relieved and energized so far.

    2. There seems to be a correlation between increased awareness of the “disorder” and an increase in the diagnosis of autism/Aspergers; especially in women because the testing, research and diagnostic tools in the last 80 years has been on boys only, and gender-specific behaviours resulting from a societal gender bias. It’s quite a phenomenon actually. Right now is the time when adult women with Aspergers are finally being recognized and properly diagnosed. Now is the time when women with Aspergers will come out of the woodwork because the awareness is increasing and they will say, “Hey! That’s me!!!” when reading other Aspie women’s stories. That’s exactly what happened to me. I’m becoming a self advocate and, in doing so, become an advocate for others.

    3. Hi – I’m 63, and just discovering this info! It would explain so much of the seeming weirdness and alienation of my life. Makes sense that we are programmed to “be nice or be quiet…”. I’m also just discovering my non-binary self and it all seems to fit together. And I wonder, what comes first: chicken or egsg?

      Thank you hannah for bringing these things to light!

    4. Why are you assuming that the ADHD was incorrect? Isn’t it possible that you have both? (ADD isn’t in the DSM-V; there are several variations of ADHD.)

      I very much understand your point though. I was diagnosed with ADHD at 53. It’s as if that very diagnosis, and the discovery process that followed in the next year, made it clear that the ADHD didn’t explain the whole story. At this time, I’m reading books, professional articles and searching for a lead to the diagnosis that I’m certain will cover “the rest of the story.”

    5. It’s possible many of us just haven’t sifted through our experiences enough to really pin down the core issues that cause our social and emotional problems until our late 20s/early 30s. Your difference maybe starts to stand out more when you notice so many of your peers’ trajectories settling down and normalizing after the constant change that’s often present in one’s first few years of adulthood.

      This is just my personal experience, but especially for those of us with prior inaccurate diagnoses, it can take a few years of going through therapies and medication changes before we realize that not only are they not helping, it is NOT OUR FAULT that they are not helping. I spent years feeling like a hopeless case, like maybe I wanted something to be wrong with me, before I realized that it was not laziness or a victim complex that kept me from getting better. Even if I had comorbid depression, the therapies that work for NTs are often ineffective for people with ASD.

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